Buddy Walk 2012 Team Natalie's Ninjas 'Ignite a New Way of Thinking'

Update: For Buddy Walk 2016, we have created a new website!  Visit https://NataliesNinjas.com to see our fundraising page.

Eighteen months ago, God surprised us with our third pregnancy. We already had two children and though, at one time I had wanted a third, I was content.  God wasn’t done with us yet.
Fast forward 7 months and the doctor discovered I had a lot more amniotic fluid than I should. Natalie had a blockage of her intestine that was not allowing her to process all the amniotic fluid. They said it was a soft marker for Down Syndrome. I remember coming home and sobbing the news to my parents who happened to be visiting. I pushed it to the back of my mind thinking everything would be fine. The doctor decided to prepare for her coming early in the event that the excess fluid caused me difficulty breathing. On New Year’s Eve and New Year’s Day, I got a steroid shot to prepare her lungs. Three weeks later, I mentioned to the doctor that I was having a little trouble breathing while laying down and they decided the next day would be Natalie’s birthday.
Natalie arrived on January 18^th. Since it was a c-section, I was unaware of what went on in the operating room but David knew as soon as he saw her that she did have Downs. I only got to glance at her before they took her to the NICU. I saw her that night after some recovery time but was still hopeful that she did not have Down Syndrome. The next day, when David was home with the big kids, the geneticist came to tell me that, though the tests were not back yet, she was pretty sure that Natalie had Down Syndrome. I still hoped for a miracle. “She didn’t even have the test back yet, how could she say such a thing?” I thought. Though it was not the miracle I hoped for, God still gave me one in our Natalie Grace just exactly how she is.
At 3 days old, she had surgery to connect her stomach and intestines and then she stayed in the NICU 25 more long days to learn to eat. I decided to sing “I Stand Amazed in the Presence” to her when I visited so she would start recognizing my voice. We were amazed with how many people were there to help us. We had meals coming to the house, people shuttling me to and from the hospital, people picking up the kids from school, friends babysitting the kids so David and I could go to the hospital together, gracious teachers loving our Zach and Julia when I had so little left to give them. Life seemed a blur for the first few weeks. As much as I panicked when I sat at home worrying about her future, as soon as I was with her again, the peace of just loving my new baby was with me.
Now, 18 months later, I’ve learned more about Down Syndrome than I ever wanted to and I still have a long way to go. Natalie was the first person with Down Syndrome that I had ever met. I tell people that being so blind to disabilities made Natalie’s diagnosis a lot scarier for me than it had to be. I think this is a reason why the Buddy Walk is so important. Sure, it’s a fundraiser for the national and local down syndrome association. Since Down Syndrome receives a very small percentage of federal research dollars, the fundraising IS very important. In addition to fundraising, however, the Buddy Walk is also meant to “ignite a new way of thinking about people who have Down syndrome. Over the past decade, the Buddy Walk has served as a national portal for disseminating positive messages and inspirational stories within the Down syndrome community to the general public.”  (from Buddy Walk website).  I feel one of the best ways I can help my sweet girl is to let people get to know her as a person, not as a ‘Down’s kid.’  I once read that one of the worst things for a child with Down Syndrome is for parents to have low expectations. We should treat her no different than our other kids. She WILL do almost all the same things they do but IN HER OWN TIME. I’ve come to realize that, though it might take her longer to reach typical milestones, I appreciate all the small steps that she takes so much more.
For all our children, I pray that they would become what their names mean. Natalie Grace means ‘birth of blessings, favor, and elegance.’ I pray for Natalie that her presence in the lives of others would be a great blessing. Even in such a short time, we can already see God answering that prayer. Thank you to all our friends and family that are so supportive of Natalie!

Our Charlotte Buddy Walk is October 6^th, 2012 in Freedom Park. If you’d like to support Natalie and others with Down Syndrome, come walk with us on Team Natalie's Ninjas! Please see our team page web page to join or contribute.
If you are not close enough to make it to the Charlotte Walk, there are Buddy Walks all over. Here is a list of Buddy Walks in the United States.
 

A Collection of our favorite Photos from Natalie’s 1st 18 months

Meeting Milestones

Natalie’s been surprising us so much lately. I can hardly believe all she’s started doing in the past few weeks. She’s really on the move! We had our 18 month IFSP review this week and it was so fun to be able to check off some outcomes.

So, here’s her current status:

She turned 18 months old! We decided to do a cake smash shoot since she wasn’t that interested at a year and I had seen some cute photography ideas since her birthday. It was lots of fun even if Julia did think we were ‘wasting’ all the cupcakes!

A few days after, I got pretty concerned that she might not be able to stay in a room with her peers when she goes to preschool this fall. She was still not feeding herself at all. She had really started eating lots of variety of foods with no problems as long as I put it in her mouth. She just would not do it on her own. So, I got out the book Fine motor skills for Children with Down Syndrome and tried some ideas for ‘helping your child develop sensory awareness and discrimination skills in her hands.” They suggested playing in things like playdough, touchabubbles , sand and doing hand massages. So, we first got out the playdough. The big kids were creating things on the kitchen table and I handed Natalie a big ball of blue playdough while she was sitting on the floor. I turned from her to the big kids and then looked back and it was in her mouth! I did not expect that as she hardly ever puts things in her mouth. I grabbed one of her straw cups with handles that she’s been able to drink smoothie from and put water in it, holding it for her. She wasn’t very interested but at least she got her mouth rinsed out. I left it on the floor. Later on that day, she was in the kitchen again. She picked up the cup and drank from it! So amazing! God again confirmed to us that she CAN do the things that Zach and Julia did but n her own time.  She also has been able to drink from her own bottle using the Ba Baby Bottle holder.  We lay her on the floor to drink, though, because she hasn’t been able to hold the bottle up in the air yet.

A few days later she amazed us again by picking up a veggie stick and eating it! We had been trying a lot of small things like puffs. When I put them on the tray she would push them all around quickly and then onto the floor. I read that if her pincher grasp was not developed, long skinny food might be easier to start with. It worked!

Gross motor skills are coming along too. Our PT suggested that Natalie might benefit from SMO’s (Supra-Malleolar Orthosis).  Natalie’s low muscle tone was causing her ankles to bend in a little while standing. The SMO’s will help the bone to grown correctly. She has to wear them 4-5 hours a day but they are small enough that they only stick up above her shoe a little. We tried some of the shoes that are designed to fit the SMO but they were so bulky, Natalie stopped crawling. Our PT figured out some of Natalie’s own shoes would work so now Natalie’s much happier with the SMO’s. Even without the help the SMO’s give her, though, Natalie is really cruising on furniture a lot. We’ve been teaching her to climb on the couch to help strengthen her arms and to ‘turn around and slide down.’ She thinks accomplishing the climb to the top of the c

Natalie gets on the Couch.

ouch is hysterical and laughs through the whole process! Her crawling is now a combination of army and traditional hands and knees. Army is still faster, though, so when she sees that Zach and Julia’s ‘forbidden’ room door is open, army still is her first choice. She wants to get in that room!

With speech, we are starting to move out of just feeding help and into some language skills.  I made a family flash card book and she seems to be able to pick out Zach and Julia with her eyes when asked.  Going to keep working with flash cards of come first words.  Repetition has always helped her learn so we try to do it every day.

I also started the growth component of Nutrivene after her 18 month checkup.  We really feel the daily supplement and digestive enzyme have been helping a lot.  I just can’t seem to remember to do the growth formula since it has to be before bed and 1 hour after eating protein.  She’s still making it on the normal growth chart but on the low side.  We are hoping the ‘grow juice’ will help her with sleeping, short term memory (comes with more efficient REM sleep) as well as growth.  That’s the idea, anyway, so we’ll see.  Along with her pediatrician visit for 18 months, we also saw the eye doctor.  Her eyes have most likely gotten worse in the last 6 months but she fought the doctor pretty hard so we can’t be sure.  He thought we’d check it again in 6 months but that she will probably need glasses sometime around 2.

Helmet Graduation

Ok, this is EXTREMELY late but that seems to be my favorite phrase anymore. As most of you may know, Natalie graduated from her cranial band on June 4^th. She wore it for a total of 28 weeks! Because we started a little older with her and because of Down Syndrome, her growth was a little slower and she needed to wear it quite a bit longer than average. The last 5 weeks, she wore it only at bed time which was perfect timing for the beginning of our sweaty summer! Her last appointment showed very little growth and though she could have still improved in her anterior numbers, her overall shape was within normal ranges so she was deemed a graduate.

Here’s her final scan.

Thank you SO MUCH to Alexandra’s P.H.A.T.E. and Blake Norquist at Orthomerica for providing Natalie with the helmet.

Amy

6 More Weeks of Helmet

As Natalie is starting the 18th week of wearing her star band, I’m a little disappointed to be told today at our appointment that she will be wearing it for at least 6 more.  It’s not unexpected, though.  She’s growing very slowly now but not without progress in the star band so we’ll keep doing it.  Several of her numbers at today’s checkup were within normal limits but her anterior symmetry(front of the face) number could still come up a little more.

I usually see the cross section of the head that just shows the shape in general so didn’t realize that her ears were pretty far off from symmetrical.  This scan shows where her ears were on day 1 in red and where they are today in blue.  Pretty cool to see the progress over the last 4 1/2 months.

 

 

For those that are interested, here’s the section I usually come home with.  It shows Day 1 in red and today in blue.

And here’s a nice round baby head shot!  Keep on growing, Natalie!

Happy Late First Birthday, Natalie!

Last summer, we were surprised with the plus sign on a pregnancy test.  My first thought was, “Oh, it’s Natalie Grace.”  Strange thing to say since we weren’t thinking of having any more children and, to be honest, it was a bit of a shock.  I had had a dream about her not too long before.  My dreams are often a little strange, though, so I didn’t really take it as a message that we were going to be blessed with another child.  But, blessed we have been.  It has been a crazy year but she has already changed our family.  Our eyes have been opened to disabilities around us, showing me Down’s Syndrome is not something to fear.  Yes, I know she’s behind other children her age, but it doesn’t make me love her any less.  She’s doing exactly what God planned for her to be doing in the time he set aside.  And, because she does things differently than what is ‘normal,’ we treasure those milestones all the more. 

In one year, Natalie has gone from a fragile, quiet, preemie that couldn’t hold her head up to a plump baby whose eyes sparkle when someone is smiling at her and whose voice can hardly be contained when she sees dinner!  I find myself grinning at her throughout the day just to see that face light up.  Zach has discovered the easiest way to make her laugh is to burp many times in a row.  I’m embarrassed to say that I’ve called upon his services when she’s bumped her head sometimes to calm her down quickly!  He has also told me he often prays for Natalie with his class even a year later.  Our sweet Julia has recently started helping out with reading the 10 books a day.  It’s just so amazing to see both my girls sitting on the floor together reading a book! 

There are still plenty of unknowns for Natalie’s future but there is also peace that she is right where she needs to be.  Thank you to everyone who has shown Natalie so much love in this first year of her life.  We are so blessed to have family and friends who have loved her and us without question!

Amy

Time Flies- 11 months old!

Wow, time has really gotten away from me these past few weeks.  It got me thinking that time with Natalie is a unique gift.  Most parents will say that kids grow up so fast.  The first year is especially quick as they change from a small sleeping-all-the-time infant to a jabbering-into-everything toddler.  Because Natalie’s low muscle tone has caused her gross motor development to lag behind, it’s hard for me to think of her as almost being a year old.  It’s as if her delayed development forces me to pay attention more and definitely causes us to celebrate small victories that might have been missed for a typically developing 3rd child.  Time for her goes a little slower and therefore allows us to enjoy her as a baby longer.

Here’s what’s been going on with us.  The day before our first check up for her star band progress, David had a car accident.  The car was not totaled but it was not drivable for 2 1/2 weeks while being repaired.  I had to postpone our first star band appointment to get some errands taken care of for the car.  We went the next week and Christina said she could already tell the cranial band was helping.  We won’t get Natalie scanned until the next appointment, though.  Tomorrow starts her 5th week of wearing the star band.  Natalie has completely adjusted with only some small redness and extreme smelliness when we take it off of her for the one hour a day.  We had a stomach bug go through the house last week so she had to take a small break from wearing it but we are all back to normal now.

I did end up painting the helmet again so got some pictures of the original pattern.  This second time seems to be working better, though, with very few scrapes in the paint job.  I used a spray primer and then the pink spray paint the first day.  The second day, I brush painted on a varnish.  The third day, I painted the butterflies and another coat of varnish.  I’m still having some trouble at the strap with paint peeling but, for the most part, it’s staying on this time.  I just love seeing her little pink helmet head to match her smiling pink cheeks!

 

 

The big kids are out of school for Christmas vacation and anxiously counting down to Christmas.  I think they tell us several times daily how many more days are left.  David and I will both be working this week so it’ll be a challenge to find ways to entertain them before the big day.  I’m hoping to get some Christmas cookie decorating in and then of course visits from two of their out of town aunts will help.

Below is an impromtu shoot in front of our Jesse tree.  We add a new ornament every night to show how the old testament stories pointed to the coming of Jesus.  So far we have a globe, apple, rainbow, sky full of stars, ram, jacob’s ladder, coat of many colors, burning bush, trumpet for Jericho.  We seem to keep falling behind so will probably end up skipping a few to get to the end.

                         

Star Band Week One

Natalie started wearing her star band on November 15th!  My first try at putting it on her made her cry but I’ve gotten better as we’ve gone along and we’ve had no tears since.  She’s been handling the change pretty well.  We started with one hour on, one hour off and today two hours on, one off.  The first day, she cried a little bit when she was on her back with the helmet on.  Today, she fell asleep on the floor while playing with it on.  Tomorrow she’ll wear it 4 hours on, 1 hour off and during naps and night time sleep.  Feels like a big jump but I think she’s already getting used to it so hopefully it won’t disturb her sleep.

 

Putting on Natalie’s Helmet

She’s also rolling all over the room now.  She just started rolling last week so I was a little worried the extra weight of the helmet would slow her progress.  It doesn’t seem to be bothering her a bit.  The pink helmet is easier for me to see pop up off the floor from the other side of the room so now I’m actually catching her rolling more often!

I couldn’t resist painting the helmet so we had a wild day once we got the star band.  I needed to get it painted and dry as fast as I could.  I like the way it turned out but am not sure if the paint will stick the whole time she has to wear it.  So far so good.  I taped it all up and spray painted the whole outside with a pink paint that said would stick to ‘most’ plastics.  Then I used acrylic paint for the butterflies and flowers and finished up with varnish to hopefully keep it from chipping.  We’ll see how it goes.

So, we’ve officially started the process.  In two weeks, we have an appointment in two weeks to check on her progress.  Though I’ll miss seeing that little head of hair, I think the cheeks make up for it!

Amy